Post-concussion syndrome: Hi all, I am new here and... - Headway

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Post-concussion syndrome

BoofBear77
BoofBear77

Hi all,

I am new here and suffering from post-concussion syndrome. I am hoping to get some advice and common ground / identification with others. Having read part of a thread from a month or two back I'm a bit scared!

I was on my road bike (cycling) on October when hit by a car. I was doing 28mph and the car at least that. I dislocated my finger and thumb, the latter digit needing an operation to hold it in place. My girlfriend who witnessed the accident said I hit my head twice which is borne out by photos of the marks I made on the side of the car and by the dent in my helmet.

So now here I am in December, I've not been back to work and I am really struggling with fatigue. More than one activity involving other people in a day and I am done in. I find it hard to wake up in the mornings. Occasionally my speech is a bit hesitant as the right word won't come. I get a metallic taste in my mouth when I'm feeling "concussiony". I get headaches and feel dehydrated a lot. It's definitely difficult to concentrate when my girlfriend's kids are playing nearby or when there is a conversation with a couple of people.

I am so frustrated. Things I think I should be able to do (eg walk to town 15 mins, see friends) leave me completely tired out. I feel just totally listless and so exhausted all the time. My work have been great but I am worried about going back in January as I don't think I'll be ready.

There you go, that's just about the full moan. If anyone has advice or can share experiences I would be so grateful.

BB

30 Replies
oldestnewest

Hi and welcome.

There is no blue print to recovery. It sounds like you are actually doing great.

There seems a concensus that it can take up to 2 years to fully gauge recovery. That is what you haven't regained after 2 2 years you doubtfully won't.

Yet you will here on this forum that the range of recovery is great and the time varied.

Basically take your time and listen to your body. Find what works for you. Oh and please ask for help from those around you. Let people know what also impacts on you.

If your tired rest and accept you will get fatigued.

One other thing let your girlfriend read the forum to let her get some insight into what you may be going through yet cannot explain to her.

It's not all doom and gloom even if you do not fully recover you are still you and still living.

Oh and remember to live.

Pax

Hi Boofbear, I am PCS too and recognise your symptoms from early in mine. Everyone is different, many other symptoms may manifest themselves over time. You are still in the early days by the sound of it and you should heed the need to sleep, your brain is recovering. To begin with you should just rest for as long as it takes, weeks, months or years. You can help yourself by avoiding all sensory overload, everything that makes you fatigued, light, TV, computer screens, conversation, exercise, noise etc. If it affects you avoid it. You may be in for a big life change, it's hard but you need to try and understand what is happening to you and how you can adapt to deal with it. There are many false peaks, you feel a bit better then bang you are on your knees again. Stay active on this site even if you just want to vent and rant. Keep a note of all the things that are affecting you, even the way you think, it will come in handy later.

It's good to keep active, but only 'til the fatigue warns you 'Enough'. You're in the very early stages of recovery and it's essential for you to minimise stress by avoiding brightly lit or noisy environments as excess stimulus is too demanding for a struggling brain.

How you manage your issues can either speed up or slow your recovery. So have an escape room where you can take respite whenever needed, and explain to you girlfriend and her children it's nothing personal when you need to be alone for a while.

A healthy diet, avoiding alcohol, light exercise and drinking lots of fluids, preferably water, are all recommended for healing. But PCS sometimes needs a long recovery period, especially if there's nerve damage, so don't force yourself back to work too soon.

Maybe call the Headway helpline and ask for their publication on PCS ; it might be helpful to show these to your girlfriend and employers. The no. is 0808 800 2244 (free calls - office hours).

Good luck Boo.

Cat.....

The consensus of Neurologists is that PCS last no more than 12 months.

My friend had a RTA and afterward was diagnosed with PCS & PTSD. The symptoms your describe are very similar to my friends and it took around 10 months for them to disapear.

At first he wasn't diagnosed with PTSD and only received CBT around the 11 month mark, this also seemed to reduce his symptoms.

Now some 13 months after the accident he says he feels himself again.

Feebie8
Feebie8 in reply to sealiphone

That's great for your friend!!

What's your "Neurologist consensus" based on?

Perhaps maybe something like "the majority of PCS sufferers recover within twelve months BUT there are those who have the great pleasure of a longer recovery period" might be a better Neurologist consensus statement...

Sapper1965
Sapper1965 in reply to Feebie8

Got to agree with you that TBI, post concussion Syndrome all have different lengths of recovery with research indicating that some poor souls continue to have permanent symptoms long after this watershed of two years. Look, you know your symptoms and as long as you are working on getting better, living as normal life as possible don’t worry about what any ones opinions are.

Feebie8
Feebie8 in reply to Sapper1965

Yea, I think the mentioned "experts" need to have a conversation with me!

I am, trying every day!! Admittingly too hard most of the time but I believe I am starting to actually realise how this is affecting me, many trials and many errors later. Maybe I'll be an "expert" one day 🤣🙏

sealiphone
sealiphone in reply to Feebie8

Well it's not my Neurologist but that's the general belief, I attended the appointment with my friend and the consultant said normally within 3 months but it can take up to 12 months for symptoms to clear up.

My friend also saw a Neuropsychologist and a Clinical Psychologist had a MRI scan and they both gave the same 3 an d 12 month prognosis

I presume there will be cases which don't fit the norm but in terms of what you should expect that's their opinion.

I did raise the question of sports people and damage to the brain which obviously last a life time, he said that a one off blow is significantly different than repeated blows ( of lower intensity).

Feebie8
Feebie8 in reply to sealiphone

Shame my brain hasn't been following the "experts" "consensus"!

It sucks not to be "normally" healing just over 13 months into this journey 🤷‍♀️

sealiphone
sealiphone in reply to Feebie8

If I'd been told it was PCS and recovery hadn't occurred, I'd question whether there is long term brain damage rather than PCS alone.

What's their opinion regarding why your symptoms haven't resolved in the expected time frame, although at 13-14 months your probably not that far from the mean.

Hi, I am posting a useful link on pcs;

theguardian.com/lifeandstyl...

A well written book with advice on the subject is called 'The Ghost in my Brain' - (also found on youtube). Buy a copy for your girlfriend to read over Christmas.

Thank you so much for all your comments. It feels really good to know that I've not been imagining things. I think I have completely underestimated it and a part of me still expects it all to be fine tomorrow and I will bounce back to normal. There's precious little sign of that happening though. It is frustrating when people ask me how I am now as they seem to expect it all to be fine and I feel like I am disappointing them or that they must think I'm exaggerating. Today has been a tough concussion day. Thank you all for your support!

It feels like you are having an incredibly tough time. I do feel the uncertainty (it could take more than a year/just do what you can) of recovery makes it very scary indeed.added on to this is the fact that you ‘don’t look unwell’ (no broken bones to recover) that can also increase anxiety. The Headway nurses were wonderful for me as they made me feel that I hadn’t lost my marbles. Possibly pushing it at the docs for some sort of specialist support may be helpful. Also, if you can, keep a journal/diary of how you feel as this can be helpful both for you to rationalise but also to share with other professionals. Personally, I went back to work too early, without any real professional support or understanding which created some difficult challenges in the work environment. I lost some sense of smell and taste (anything spicy just burned my mouth), memory seems poor - have to write things down, I struggle to plan and organise as I did and at times too many different noises can make me incredibly angry and unable to cope. I hope you can find some peace and relaxation over the festive period; and good luck

I agree with paxo05. There is a lot of misunderstanding about post concussion syndrome but the advice you have been given on here is sound. My head injury was 5 years ago and I was given no advice initially. Like you, I kept trying to get on with life, not knowing what was wrong with me, but feeling very odd. I couldn’t speak properly, got lost regularly, the ground wasn’t where I expected it to be when I walked, couldn’t walk and talk at the same time, hypersensitivity to light and noise (especially more that one person talking) and lots more. I was told 2 weeks, 2 months and then ‘what you have at 2 years is what you’ll be left with’.

I’ve seen 3 neurologists and 4 neuropsychologists and what they agreed is that I suffered a mild tbi. I haven’t written much until now because I’ve been involved in an awful legal action which has just settled, which means that I will now write in more detail about my experiences. Ironically, one advantage of the litigation has been access to so many medical experts.

So what I can tell you is that your symptoms definitely echo mine and you need to heed the advice on here and take it very easy. Don’t do too much because you will exhaust yourself and hinder your recovery, and it’s always difficult to know when to stop before you’ve actually done too much. Treat yourself kindly and make yourself rest, and avoid people and places which drain you. Unfortunately, other people find it difficult to understand and it would be good for those close to you to read even this page of advice.

You are not alone and we understand what you’re going through.

Take care, Boo

F

Sapper1965
Sapper1965 in reply to FridayS

Hi there, great post your story is similar to mine ,and still ongoing with a legal case. Many thanks for your attempt to support other members.

asbas
asbas in reply to FridayS

Wow yeah mine was 6 years ago and it was only maybe 2 years ago that I started to feel like myself again. I still have the fatigue symptoms but it is what it is. Also had no medical assistance as they kept saying it was anxiety and not the concussion. Would love to hear about your experience

I gather you had a scan and all was okay?..See Doc and get it on record. I was fearful after my SAH/Brain bleed and I was doom and gloom, so see Doc and ask him/her what they think xxx Good luck hope all is okay xx

Thank you WinB, no not had a scan yet. Still waiting :/

It's been a bit of a rough day today - very sleepy, headaches, feel sick. Been for a walk though but that was enough. I always feel guilty about not being able to help ay home / do things

ZoeAdams
ZoeAdams in reply to BoofBear77

Sorry you have had a bad day. Over time the good days will be more frequent. Try not to feel guilty - although I did and still do. Do you wake with headache and nausea? I was advised to put a rolled up duvet under the top end of my mattress to raise it as sleeping slightly raised relieves pressure on your brain whilst you sleep. May help, it did me.

Hi I hope you recover a lot in the next few months, and that your symptoms become better. I have been told that pcs can affect some people for over 3 years or for life, this is what a neurologist called text book and he said it happens in a percentage of pcs cases, but may just refer to headaches and not other symptoms, I cannot quite remember because it was a long time ago,( I remember the over 3 years to life bit , but not the percentage of people). My big problem is headache and migraine, and they are triggered by exertion and lights.

I think it is better to rest at the beginning and hope the headaches go or improve , rather than return to work too soon, or do half days and be careful.

Sorry to hear Boofbear77. Hang on in there. I had my accident in February and my recovery continues. My headaches are fewer, my stamina improving but the fatigue, missing words and tired brain-fug continue.

I would say the most important thing is to listen to your own body/ brain and do what it needs. Don't be pushed to return to work too soon, rest as much as possible. The brain is busy making new pathways and that takes a lot of energy. If you use your energy in other things, your brain will take longer to heal.

I found that I knew more about PCS than my GPs did. It is certainly, 'normal,' to feel the way you do right now. Rest! Rest! Rest!

BoofBear77
BoofBear77 in reply to ZoeAdams

Thank you Zoe, sounds like you have had / are having a similar experience. "Tired brain-fug" is a better description than I have managed so far!

Hi boofbear, sorry to hear what you’re going through.... it really is awful. I fell down 15 stone stairs head first 3 years ago, hitting my head a few times and was diagnosed with PCS. I felt very similar to you and had to take 3 months of work and needed occ health to alter my work days for a few years (sounds drastic but only by a little bit). I guess it’s not coming across but I want to say it’s so hard at the beginning. I thought I would never ‘get better’ and thought that was going to me but month by month, the brain is wonderful and I felt more and more like me. 3 years on and I feel back to myself- with a few alterations (giving up marathon running and still get ringing in my ears if I push myself too much). It’s hard but please remain hopeful!

It’s hard going back to work but listen to your brain and don’t push yourself (there is some recent studies that show a link between PCS and chronic fatigue) so really important to listen to yourself.

Advice (and again everyone’s different so you may/may not find it helpful).

See if work can alter your commitments or if you can do shorter days. I found I needed to sleep a lot at the beginning and it felt that my brain just needed to shut down at times throughout the day. I’m a psychologist so I needed to see fewer clients and have ‘rest periods’ between them to stop all dizziness, headaches and blurred vision. I’m not sure if you could incorporate that into your days?

I used to find I got very noise sensitive (and light), it kinda felt my senses were more sensitive. I found I had to limit time with my niece and nephew or take their noise in blocks. I also found wearing earplugs useful as it seemed to dull the stimuli.

I changed my days and gave myself permission to rest when I needed.... don’t fight the exhaustion, I know it’s hard but just go with it. At the beginning I had to sleep after just going to the toilet aS I’d be exhausted from just walking to the bathroom and remembering how to use it. I’m not sure if it’s correct but my thinking was the brain needed all the body’s energy to fix itself.

I found a good psychological book that have loads of tips (that’s my default thou and know it’s not do everyone). Happy to give you the title/author if you wanted.

And I realise your head is probably buzzing now from reading this massively long post 🙈 let me know if I can be anymore help.

BoofBear77
BoofBear77 in reply to Jenni3

Hi Jenni3,

I would love to get the title of the book, anything that makes me feel like I can get some control is a plus.

"I used to find I got very noise sensitive (and light), it kinda felt my senses were more sensitive. I found I had to limit time with my niece and nephew or take their noise in blocks. I also found wearing earplugs useful as it seemed to dull the stimuli."

- I really relate to this. My girlfriend and I have been talking about getting some headphones for me to block things out when I need to. I am definitely sensitive to loud noise and light to a lesser extent.

Jenni3
Jenni3 in reply to BoofBear77

It was called

Overcoming Mild Traumatic Brain Injury and Post-Concussion Symptoms: A self-help guide using evidence-based techniques. N. King.

I’ve since lent it to a friend of a friend so can’t tell you the chapters etc. But what I took from it was being kinder to myself instead of pushing myself when I couldn’t do what I could before and simple strategies like recording meetings so I could go back to them (as my memory and concentration were terrible). I might even learnt the earplugs thing from the book too?

Keep the hope!! I know it feels so terrible at the moment but honestly it will get better!

If I was the OP I wouldn't be too concerned about it lasting beyond the average range because as Amber11 has said the probability drops the longer the symptoms remain.

Hi

This is a great community with some good thoughts and advice, no 2 people are the same, and seeing what’s worked for others and using that and seeing what works for you and what doesn’t is probably a good plan.

I found diet important, plenty of fresh healthy food, water, and some supplements like co10, udo oil and taurine worked for me, plus some acupuncture

Good luck

Nick

Hi,

PCS when untreated can go on for years so it is best to nip it in the bud as early on as possible.

Diet plays a huge role in recovery and there is a lot of scientific research. Up to 50% of vitamin D reserves can be lost after any head injury and contribute to fatigue and other symptoms. Your doctor can run blood tests for you - be sure to ask for full counts as levels of B6 and B12 are often impacted as well as other vitamin and mineral reserves.

The on-going symptoms are caused by the 'secondary injury' which is an inflammatory response and biochemical cascade which is the bug-bear as this can continue for years unless addressed. This is the major cause of brain injury symptoms and if you can get these under control using diet and supplements then you will know what outcomes you have to deal with caused by neural network damage.

The type of injury you have often leads to microscopic damage around the mid-brain which is often part of the cause of difficulty dealing with communication and can affect the way information moves around the brain structures.

I have given some links below but nutrition is one of the key things you can do to help yourself. Eliminate all sugar (sugary drinks), processed and fast foods, alcohol and table salt.

Most people should recover from a concussion in 3 weeks but often this can take up to three months. PCS is usually only diagnosed after 3 months.

Links are about what happens regarding the secondary injury, PCS, and fatigue. If you have any questions I am happy to help.

globalbia.org/about-brain-i...

globalbia.org/post-concussi...

globalbia.org/understanding...

Let us know how you get on. Wishing you the best, Annie

Hi,

I hit my head in Feb 2020 and then had an epileptic seizure so my head took a really good hit and I sustained a bad concussion and have been diagnosed with post concussion syndrome. I can't remember A&E, the time in hospital, the week afterwards, and many other things as well like how to do my job. I'm currently back at work doing 2 hours a day and under pressure to increase my hours. I feel like I can barely remember the day it is most of the time.

The headaches are horrendous, the emotional side - I cry at everything for no reason, I'm irritable, the nausea, the tiredness, and the worst is the lack of understanding from people who haven't had their head smacked in.

I try to be understanding, I know I appear normal most of the time. I lose it though when my dad talks over me when I am trying to think of something or my mum tells me my headaches are much better now. Or better still when my boyfriend tells me it's not that serious as I don't have a bleed on the brain.

I'm struggling with this at the moment. My neurologist says its all about keeping my stress levels low and rest and taking time. I'm a trainee lawyer. Or I was. I can't remember how to do my job. I'm holding on to it by the skin of my teeth - how do I keep my stress levels low?

I can't remember words. I can't remember names. I'm also not sleeping properly. My neurologist referred me to neuropsychologist for help with some of these symptoms but there is a 12-18 months waiting list!

I know it must heal. I know it must get better. People on here say so. But wow is it hard living through it.

Sorry, I just wanted to say hi from a fellow struggler and I hear you!

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